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Advocates Take Stroke Message to Washington

You’re the Cure stroke survivors and caregivers took their message that stroke is preventable, beatable and treatable from the White House to the halls of Congress during American Stroke Month in May! After touring the East Wing of the White House, advocates attended a Congressional briefing and visited legislative offices in Washington, D.C.. Their mission was to explain the financial costs that can accompany the long road to recovery after a stroke and also urge Congress to support for a tax credit that would help families offset the burden.

Studies have shown that family caregivers provide approximately $6.1 billion annually in care to stroke survivors, which can exact physical, emotional and financial tolls. Meanwhile, the annual costs associated with stroke are $36.5 billion, according to information provided to elected officials and their staff by Brendan Conroy, M.D., medical director of the Stroke Recovery Program and chief medical information officer at Medstar National Rehabilitation Hospital.

Seventy percent of people return home after a stroke and often need a family member of friend to care for them with a third of the caregivers spending more than 21 hours a week providing care. Yet, family members often can’t afford not to work.

“Caregivers must think carefully about quitting their jobs – the effects could be devastating financially,” said Gail Gibson Hunt, president and chief executive of the National Alliance of Caregiving.

Hunt said seven of 10 caregivers have to change their work status, losing wages, pensions and Social Security.

You’re the Cure advocate Robin Williams, whose husband Van Williams had a stroke in January 2012, said home-based care costs much less than a nursing home. Even so, her family has paid a heavy toll.

“Without the love, care, and support of their family caregivers, many stroke survivors would not be able to live at home and would instead be forced to go to a nursing home for their recovery at a much higher cost to insurers and government programs like Medicare and Medicaid. A tax credit that would help to offset some of the financial costs of caregiving that family’s experience would be a very helpful step in the right direction.”

The Williams cashed out savings and retirement plans, received loans from relatives and maxed out credit cards to get needed care. At one point, their monthly health insurance through COBRA cost $1,700. In the process, they also lost their home.

“It is safe to say that it is going to take a long time for our credit scores to recover,” Mrs. Williams said. She added that legislation “like the Return to Work Act that helps educate and encourage employers to make accommodations so that stroke survivors can go back to work also makes a great deal of sense.”

The Return to Work Act would assist survivors of stroke and other debilitating health occurrences in returning to work. The bill was assigned to a congressional committee in October, where it must be considered before possibly sending it on to the House or Senate as a whole.

“Van has made great achievements that I don’t even think he realizes, and he still has a lot to offer an employer.  He does everything asked of him to make his recovery a success, and I could not be prouder of him,” Mrs. Williams said.

The American Heart Association and American Stroke Association support the Return to Work Act. Other legislation the organization supports on behalf of stroke survivors and caregivers includes: the Americans Giving Care to Elders Act of 2013, which would create a 1,200 tax credit for caregiving expenses on behalf of elderly relatives; and the Medicare Access to Rehabilitation Services Act, which would permanently repeal Medicare caps on outpatient therapy.

              

 

 

 

 

 

 

 

 

Check out the You're the Cure Facebook page to see photos of the event!

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Your American Stroke Month Mission...

Did you know that stroke is our nation’s 4th leading killer? Or that someone has a stroke every 40 seconds in the United States? May is American Stroke Month and the goal is to raise awareness that stroke is preventable, treatable, and beatable.

Over the next few weeks (and beyond), there are many opportunities for You're the Cure advocates to participate! Below are a few great opportunities to get you started! 


Contact Congress

It is crucial that our federal lawmakers are involved. Washington must do more to help stroke patients and their caregivers, but it’s up to us to make stroke a priority on Capitol Hill! 

Send a letter to your Members of Congress today and tell them to make American Stroke Month a priority!

Your representative in Congress can participate in three simple ways to highlight the importance of American Stroke Month. They include:

  • Attend the American Stroke Association / National Stroke Association Congressional briefing on May 14th, which will highlight the issues and challenges facing stroke caregivers.
  • Speak on the floor of the House or Senate about the importance of American Stroke Month or highlight the month in their constituent newsletter.
  • Join the Congressional Heart and Stroke Coalition. The Coalition, which is made up of more than 125 Members of the House and Senate, works to raise awareness of the seriousness of cardiovascular diseases and acts as a resource center on heart and stroke issues.

May is the month to get our nation's legislators focused on stroke. Urge Congress to step-up its commitment to fighting stroke during American Stroke Month!




Learn and Share the Facts about Stroke

Stroke can affect anyone at anytime. Therefore, it is crucial that we learn the facts about stroke and share them with friends and family! Below are four easy ways to raise awareness.

Keep checking the Pulse blog and the You're the Cure Facebook page for the latest news and opportunities around American Stroke Month!

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Urge Congress to Participate in American Stroke Month!

Earlier this month, there was big news for stroke patients on Medicare. On April 1st, President Obama signed the Protecting Access to Medicare Act. Included in the law is a provision that extends the Medicare therapy caps exceptions process for the next 12 months. This means for the next year, stroke survivors on Medicare can rest assured that they will have access to the crucial rehabilitation needed to help in their recovery. Now decisions around therapy won’t be hampered by an arbitrary cap or coverage limits.

Even though this was a victory for stroke patients on Medicare, it is disappointing that these therapy caps were not permanently repealed and that stroke survivors might find their crucial therapy in jeopardy again a year from now.

Congress' failure to repeal the therapy caps shows how important it is that the voices of stroke survivors be heard on Capitol Hill. Luckily, with May being American Stroke Month, this is the perfect time to speak up in support of stroke patients. During those 31 days, we will be promoting awareness about stroke among lawmakers and how together we can make it preventable, treatable, and beatable. 

However, you do not have to wait until then to get your legislators involved!

Send a letter to your member of Congress today and tell them to make American Stroke Month a priority!

Your representative in Congress can participate in three simple ways to highlight the importance of American Stroke Month. They include:

  • Attend the American Stroke Association / National Stroke Association Congressional briefing on May 14th, which will highlight the issues and challenges facing stroke caregivers.

  • Speak on the floor of the House or Senate about the importance of American Stroke Month or highlight the month in a newsletter.

  • Join the Congressional Heart and Stroke Coalition. The Coalition, which is made up of more than 125 Members of the House and Senate, works to raise awareness of the seriousness of cardiovascular diseases and acts as a resource center on heart and stroke issues.

May is the month to focus our legislators on stroke awareness. Urge your legislator to participate in American Stroke Month today!

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Relief for stroke patients on Medicare

There is some big news to report from Washington, D.C. Over the past several months, thousands of You’re the Cure advocates like you have sent over 8,500 messages to Capitol Hill urging their lawmakers to stop potentially devastating caps on outpatient therapy for stroke survivors on Medicare. This week Congress listened and took action on these therapy caps!

On Monday, the Senate followed the House by passing the Protecting Access to Medicare Act. Included in this bill, which the President signed into law on Tuesday, is a provision that extends the Medicare therapy caps exceptions process for the next 12 months. This means for the next year, stroke survivors on Medicare can rest assured that they will have access to the crucial rehabilitation needed to help in their recovery. Now decisions around therapy won’t be hampered by an arbitrary cap or coverage limits.

Even though this is a victory for stroke patients on Medicare, we were disappointed that these therapy caps were not permanently repealed. Although this 12 month reprieve is welcomed, it is unfortunate that stroke survivors might find their crucial therapy in jeopardy again a year from now. We will continue fighting for a repeal of the caps and will no doubt need your help in the future. But for the moment, we should all be proud of this accomplishment.

Thank you for the actions you take to ensure the priorities of heart and stroke patients are kept in front of our nation’s decision-makers.

You make a difference.

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After a stroke, patients need customized palliative care

People recovering from a stroke should have a well-coordinated medical team to personalize care, optimize quality of life and minimize suffering, according to a scientific statement published Monday in the American Heart Association journal Stroke.

The statement is the first in the United States to outline fundamental palliative care for stroke survivors. Palliative care is patient- and family-centered care that improves life by anticipating, preventing and treating suffering.

“The majority of stroke patients need access to some form of palliative medicine,” said Robert Holloway, M.D., M.P.H., lead author of the statement and professor and chairman of the neurology department at the University of Rochester in Rochester in New York. “The stroke team and its members can manage many of the palliative care problems themselves. It encourages patient independence and informed choices.”

Palliative care should be a collaboration between patients, families, a stroke team and various providers, including neurologists, neurosurgeons, primary care providers, nurses and therapists, he said.

Stroke survivors or family members should expect healthcare providers to:

  • Talk about preferences, needs and values as a guide to medical decisions.
  • Discuss what aspects of recovery are most important.
  • Have effective, sensitive discussions about the prognosis and how to deal with physical or mental losses from a stroke. If necessary, they should discuss dying.
  • Help guide through choices about life-sustaining treatment options. Providers should address pros and cons of CPR, ventilators, feeding tubes, surgery, do-not-resuscitate orders, do-not-intubate orders and natural feeding
  • Know the best treatment options for common post-stroke symptoms, including pain, other physical symptoms and psychological problems like depression and anxiety.
  • Engage a palliative care specialist if complex issues arise.
  • Help preserve dignity and maximize comfort throughout the course of a stroke, including during the dying process and when nearing death.

“Stroke is a devastating disease that has received little attention in the area of palliative care so far,” Holloway said.

Nearly 800,000 people have strokes annually. About 130,000 stroke-related deaths occur in America yearly. Up to 30 percent of all survivors are permanently disabled.

To help improve access to palliative care for stroke survivors and their families, the American Heart Association/American Stroke Association also announced its support today for legislation aimed at improving palliative care services for patients with serious illness.  The Palliative Care and Hospice Education and Training Act introduced by Rep. Eliot Engel, D-N.Y., and Sen. Ron Wyden, D-Ore., would establish education centers and support career development in palliative medicine. The Patient Centered Quality Care for Life Act introduced by Rep. Emanuel Cleaver II, D-Mo., and Rep. Spencer Bachus, R-Ala., would expand palliative care-focused research, create a workforce training initiative, and establish a stakeholder summit to address patient-centered care, among other measures.  

For more information about the new scientific statement, check out our official news release

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Senator Kirk: A Stroke Survival Story

In January of 2012, Illinois Senator Mark Kirk suffered a stroke. He recently sat down with Stroke Connection and told his story of survival. See an excerpt below and then follow the link to the full article.

Stroke survivors do not always return to work. Even when they do, it’s safe to say that they are not welcomed back by the Vice President of the United States. Not so for Mark Kirk, the junior Senator from Illinois.

In January 2012 Sen. Kirk had experienced dizziness and felt numbness in his left arm and leg on a Saturday morning and checked himself into a hospital near his home in Chicago. He was given anticoagulant therapy when imaging tests revealed a dissected carotid artery. When his vision blurred and his lift side continued to tingle, he was transferred to Northwestern Memorial Hospital, a primary stroke center, in case surgery was necessary. That was a good call as surgery was required when the dissected artery blocked the blood flow to his brain on January 27th. About a week later, we woke up in the intensive care unit following two surgeries, including a craniotomy, to relieve the swelling in his brain. “I remember thinking that someone was sharing a bed with me, not realizing that is was my own leg,” he said in an interview with Stroke Connection. He vaguely remembered a Super Bowl party the ICU staff had and the smell of the food they brought.

A few days later he was transferred to the Rehabilitation Institute of Chicago. There he dreamed that three angels visited him and asked him to go with them, but “I said no because I knew where I was, on the ninth floor of the RIC. And why I was there – to begin a long, difficult recovery from an ischemic stroke,” he recalled in an interview with the Washington Post.

To read the full article, follow the link to online version of Stroke Connection.
 

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Action Needed: Last Chance to Stop Therapy Caps

For stroke survivors on Medicare and their families, the countdown to March 31st is like déjà vu.  Year after year, Congress waits until the last minute to pass temporary fixes to the ‘therapy cap’ problem, but this year, we’re saying enough is enough.  Will you join us in telling Congress to stop therapy caps for good? 

Therapy caps are unfair coverage limits placed on the rehabilitation stroke survivors need to recover and thrive following a stroke.  If Congress does not act before March 31st, a typical Medicare beneficiary would face a $1900 cap on their outpatient therapy care, with no exceptions.  On average, that amounts to a single evaluation and just 19 outpatient therapy sessions. However, stroke survivors often need 3-5 therapy sessions a week, which means they’d reach the caps in less than two months.

We feel that stroke survivors’ rehab plans should be decided between them and their health care providers, not by arbitrary limits set in Washington, D.C..  Help us demand better for stroke survivors by sending an email to your legislators today!

With your help, we can end therapy caps and give stroke survivors and their families the peace of mind that the care they need to recover from a stroke will be there for them, without limits.

 

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Learn & Share Your Post-Stroke Tips

After a stroke, even the simplest tasks can be very challenging.  Survivors often face limb weakness, numbness or paralysis, communication challenges, and difficulty with their vision.  However, we know stroke survivors and caregivers across the country are persevering and discovering new, creative ways to carry out the daily tasks they need to.  Through their recovery, they find a 'new normal' and we want to help share these helpful tips far and wide. 

That's why the American Stroke Association created a volunteer-powered library- Tips for Daily Living- to gather ideas from stroke survivors, caregivers and healthcare professionals who’ve created or discovered adaptive and often innovative ways to get things done!  For example, do you have to put up a ponytail with one hand?  Watch Karen’s video!

(Please visit the site to view this video)

Help us grow the library!  Do you have something to share that could help stroke survivors?  Share your tips by completing the online submission form at www.StrokeAssociation.org/tips.  You’ll get a FREE AHA/ASA recipe book and Stroke Solidarity String for participating!

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The 2013 State Legislative Wrap-Up is Here!

Today’s blog post is by Mark Schoeberl, the American Heart Association’s Executive Vice President of Advocacy and Health Quality

I am pleased to again this year present you with our annual report of state and local public policy progress. We take pride in the diligent efforts of our advocates, volunteers and staff who ensure that we remain focused on helping improve the cardiovascular health of all Americans.  As you read this report you will quickly realize that we saw unprecedented public policy success across the country during this last fiscal year.  The victories you will read about in the following pages have a direct and profound impact on our 2020 national goal: To improve the cardiovascular health of all Americans by 20 percent while reducing deaths from cardiovascular diseases and stroke by 20 percent.

As we review our 2012–2013 state and local public policy, we should be proud of our active advocacy presence in all 50 states, the District of Columbia, and Puerto Rico.  We helped support the passage of state laws and local ordinances that impact heart disease and stroke risk factors as well as policies that further protect survivors of heart disease or stroke.  Our significant public policy achievements, which you can read about below, include public policies enacted in fifteen states that will assure all newborns are screened for critical congenital heart disease before going home for the first time. Seven states enacted new laws that will assure all students have been CPR trained before they graduate from high school. In the area of encouraging physical activity, two states passed shared use laws that will expand opportunities for physical activity in communities across those states. Six states enacted policy that will strengthen their stroke systems of care and six states moved to strengthen their STEMI systems of care.  Four states were successful in increasing their public funding for heart disease and stroke at the state level. Tobacco tax increases occurred in three states and two states moved to strengthen their smokefree air laws.

On behalf of the thousands of You’re the Cure advocates, association volunteers, donors, and staff who have made these successes possible, it is my pleasure to present to you this annual report of state and local advocacy accomplishments.  Together, we are the architects of a healthier future.

 

 Click on the image to view the 2013 State Legislative Wrap-Up!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

PS- Stay tuned next month for a video highlighting these successes!  We’ll need your help to share it with friends, family, colleagues, and neighbors to demonstrate the progress we’re making toward healthier communities and healthier lives through public policy changes… and to encourage others to join the You’re the Cure movement too!

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Help Stop Therapy Caps

If you had a stroke and needed therapy to regain your ability to walk, talk, and carry out daily activities, would you want there to be a limit on the amount of therapy your health care plan covered? 

For stroke patients on Medicare, these ‘therapy caps’ are a real concern.  Limits on outpatient speech, physical, and occupational therapy could force beneficiaries needing therapy beyond the caps to pay out-of-pocket for costly care, or forgo additional therapy they need… unless Congress acts now. 

Our legislators have the power to repeal the caps, or extend an ‘exceptions process’ that has eased the impact of the caps, but they need to take action by December 31st.   Will you take two minutes to ask your legislators to stop the caps? 

The typical Medicare beneficiary has a $1,900 therapy cap.  On average, that amounts to a single evaluation and just 19 therapy sessions.  However, stroke survivors often need 3-5 therapy sessions a week, which means they’d reach the caps in less than two months.  We must do better for these survivors. 

Over 50 groups, including the American Heart Association/American Stroke Association, have joined together to push Congress to address the Medicare therapy caps- and you can be part of the action!  Here’s how you can help:

1)      Send a quick email to your Members of Congress today.  It’s easy… we even got the message started for you. 

2)      Encourage others to act too.  Share this link-http://bit.ly/17zpYPK - on Facebook and Twitter, using the hashtag #StopTheTherapyCap in your message.

Thank you for speak-uping to protect vital therapy for stroke patients!  We’ll keep you updated on the progress we’re making on Capitol Hill on this important issue.  

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Understanding the Financial Costs of Stroke Caregiving

Being the family caregiver of a stroke survivor is often rewarding but it also can take an enormous physical and emotional toll on the caregiver. In addition, there can be significant financial costs that can come with being a family caregiver- an issue often overlooked and less understood.

Nearly 50 percent of Medicare beneficiaries discharged from the hospital after a stroke return directly home, often with the help and support of a spouse or other family caregiver.  Without this assistance, ranging from personal care—including bathing, feeding, and toileting—to housekeeping and medication adherence, many stroke patients would not be able to remain at home but would instead be in a nursing home or hospital.

Although data on the economic value of family caregiving for stroke survivors is scarce, one study conducted about a decade ago conservatively estimated that informal caregivers provide an estimated $6.1 billion annually in informal care to stroke survivors. And overall in our country, it is estimated that family and friends who provide unpaid care to loved ones with conditions that cause limitations to daily activities contribute a whopping $450 billion annually in economic value!

Despite this huge contribution to our country, this service often comes at a financial cost to the caregiver. According to a 2005 survey conducted by the American Heart Association/American Stroke Association (AHA/ASA), nearly 43 percent of stroke caregivers said being a caregiver had affected them financially “quite a bit” or “a lot”. If you’re a family caregiver you may very well have experienced this for yourself, but nevertheless, here are some statistics that may surprise you about the financial costs of being a family caregiver:

• They spend $5,531 out-of-pocket in annual direct costs (for such items as assistive devices, modifications to the home, etc.).
• They provide an average of 20.4 hours of unpaid care per week.
• Seven in 10 caregivers cut back on work hours, change jobs, or stop working.
• Loss of wages, Social Security benefits, and pensions for caregivers age 50 or older average $283,716 for men and $324,044 for women.
• One in 3 caregivers use their savings to be a caregiver.
• One in 4 caregivers cut back on spending for their own preventative health or dental care.

At the AHA/ASA, we think it’s high time that we as a nation start focusing on the financial needs of family caregivers and providing them with the support they need to continue their invaluable labor of love. That’s why we’ve joined an informal alliance of organizations working on Capitol Hill to help educate lawmakers about the financial consequences of being a family caregiver. We have been advocating for the establishment of a tax credit for family caregivers that would alleviate some of the financial burdens of providing care. As Baby Boomers age and the need for caregiving increases, providing a tax credit to family caregivers to supplement the care provided through Medicare and Medicaid will become increasingly important for meeting the nation’s long-term care needs – not to mention for our nation’s long-term fiscal health.

Fortunately, some lawmakers are listening. Senators Amy Klobuchar (MN) and Barbara Mikulski (MD) recently introduced legislation in the Senate that would allow taxpayers caring for an aging family member to receive a tax credit of up to $1,200 a year to help assist with the costs of family caregiving. While this bill, the Americans Giving Care to Elders (AGE) Act (S. 1485), won’t address all of the financial needs of caregivers, we believe it is a step in the right direction.

Stay tuned for You’re the Cure action alerts for more information about this effort and opportunities to act.

**Today's blog post was written by Stephanie Mohl, Senior Government Relations Advisor for the American Heart Association/American Stroke Association.

We want to hear from you:  Are you a family caregiver for a loved one who’s had a stroke? How has this affected you and your family financially? Tell us your story in the comments below.

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The Government is Shut Down, but Our Fight Is Not

Turn on any cable news station these days and you’ll see it… the continuously running clock that is tracking the hours and minutes of the government shutdown.  When I see it, I can’t help but think about what could or should have been accomplished during that time, especially when it comes to important policy changes that can help Americans live healthier lives. 

Will you speak-up and tell Congress that we can’t afford inaction when it comes to the fight against heart disease and stroke?  

You see, the 10 days our nation’s elected officials have spent trying to figure out how to reopen the government is time they could have used to:

1) Restore funding for the National Institutes of Health, which supports life-saving heart disease and stroke research.

2) Make progress toward the passage of an education bill that includes the regular, quality physical education our kids need to stay active and healthy.

3) Extend the Medicare therapy caps exceptions process which is necessary in order to ensure Medicare beneficiaries who have a stroke are able to access and afford the rehabilitation they need. 

With less than three months left before the end of the year, we need a quick resolution to the government shutdown to ensure Congress is able to address these key issues and others.  And while our lawmakers have been doing a lot of talking lately, it is time for them to listen… to you!

Please take two minutes right now to remind Congress about the work left on their ‘to-do’ list that heart disease and stroke patients, caregivers, researchers, and advocates are counting on them to accomplish. 

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Bringing Stroke Awareness to the Hill

Today, the American Heart Association/American Stroke Association hosted a briefing on Capitol Hill to share the latest stroke data with congressional staff and to educate them about important research underway to better understand the human brain. 

Dr. Bruce Ovbiagele, professor and chairman of the Department of Neurology at the Medical University of South Carolina, Charleston, presented the key findings from a new AHA/ASA study released today, including:

  • Almost 4 percent of U.S. adults — nearly one in 25 — will have a stroke. This translates into an additional 3.4 million people with stroke in 2030.
  • Costs to treat stroke may increase from $71.55 billion in 2010 to $183.13 billion.
  • Annual costs due to lost productivity could rise from $33.65 billion to $56.54 billion.
  • Americans currently 45-64 years old are expected to have the highest increase in stroke at 5.1 percent.
  • Stroke prevalence is projected to increase the most among Hispanic men between now and 2030, and the cost of treating stroke in Hispanic women is expected to triple.

Additionally, National Institutes of Health (NIH) leaders presented information about the recently-announced BRAIN Initiative, an ambitious new effort to map the human brain. Dr. Kathy Hudson, the  NIH’s Deputy Director for Science, Outreach, and Policy, and Dr. Story Landis, Director of the NIH’s National Institute of Neurological Disorders and Stroke, spoke about how the new tools being developed through the BRAIN Initiative can lead to a better understanding of how the brain works and advancements in how neurological conditions such as stroke, epilepsy, and Parkinson’s disease are treated.

The briefing was capped off by You’re the Cure advocate Jose’ Maldonado, was able to help bring the facts to life by sharing his story of surviving a stroke.  After suffering a stroke at the age of 46, Jose’ found himself having to learn to talk, walk, and read all over again.  But through his determination and the dedication of his family to his rehabilitation, Jose’ is now thriving.  He regularly counsels fellow stroke survivors, advocates with his lawmakers, and participates in clinical research trials.    

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Ask Your Representative to Support Stroke Awareness

The numbers are staggering...

  • About 795,000 Americans suffer a new or recurrent stroke each year.
  • Stroke kills more than 128,000 people a year, making it the 4th leading cause of death.
  • More than $38 billion is spent each year on stroke-related medical costs and disability.

Yet, many Americans still do not know their risk factors or how to spot a stroke in order to respond quickly in the event of an emergency.

To help raise awareness, Congresswoman Joyce Beatty (OH-3) has introduced a resolution in the U.S. House of Representatives to recognize May as National Stroke Awareness Month. As a stroke survivor herself, she understands the impact this disease has on so many Americans, of all ages, races, and ethnicities, and is urging her colleagues in Congress to join her in showing their support.

And we can help! Please send a quick email to your Representative right now to ask him/her to add their name to the National Stroke Awareness Month resolution before April 30th.

Remember, together we can end stroke!

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Spot a Stroke F.A.S.T.

The American Heart Association and American Stroke Association have joined with the Ad Council to launch their first national multimedia public service advertising campaign (PSA) to raise awareness about F.A.S.T., an acronym for recognizing and responding to the sudden warning signs of stroke.

When you can spot the signs, you'll know quickly that you need to call 9-1-1 for help. This is important because the sooner a stroke victim gets to the hospital, the sooner they'll get treatment. And that can make a remarkable difference in their recovery.

F.A.S.T. is:

Face Drooping Does one side of the face droop or is it numb? Ask the person to smile.

Arm Weakness Is one arm weak or numb? Ask the person to raise both arms. Does one arm drift downward?

Speech Difficulty Is speech slurred, are they unable to speak, or are they hard to understand? Ask the person to repeat a simple sentence, like "the sky is blue." Is the sentence repeated correctly?

Time to call 911 If the person shows any of these symptoms, even if the symptoms go away, call 9-1-1 and get them to the hospital immediately.

Help spread the word by sharing this infographic, video PSA, or Facebook cover photo with your friends and family today! 

Visit the Together to End Stroke webpage for more information.

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“Hello! My name is ____”

It’s time to welcome the 113th Congress!  We all know the best welcomes are personal, so we’re asking You’re the Cure advocates to introduce themselves to their members of Congress by recording a video and uploading it to Facebook.

We’re calling it the “Hello, my name is ____” campaign.  We want your elected officials to know you and your heart or stroke story- and to remember it when they vote this year.  When you record your video, consider using this script (and try to keep your video to about 60 seconds!):

 “Hi my name is [your name] from [City, State].”

 “I am passionate about policy changes that can help improve cardiovascular health in this country because [tell your story].”

 “Now that I’ve shared my story with you, I have one question for you: Will you remember me when you vote this year?”

Watch an example from our National Grassroots Director, Clarissa Garcia:

(Please visit the site to view this video)

Once you’ve recorded your video on your phone, tablet, or camera, save it and upload it to Facebook. To upload your video to Facebook:

  1. Scroll to the top of your Facebook homepage where your status box is.
  2. Click Add Photos/Video.
  3. Click Upload Photos/Video.
  4. Select your video from the location you saved it to on your computer or mobile device.
  5. Write a post for your video.  Make sure to ‘tag’ your Representative and Senators and our American Heart Association: You’re the Cure page!  We recommend using this caption:

Hello, @[Enter your lawmakers names starting with an “@” symbol to tag their accounts], my name is [your name], and I’m an @[American Heart Association: You’re the Cure] advocate. Here’s why I support heart-healthy and stroke-smart public policies. Will you remember me when you vote this year?

(Note: Use our Legislator Search tool to identify your Representative and Senators.  You’ll need to “Like” their Facebook pages in order to ‘tag’ them with your video.)

If you’re unable to upload a video, there’s another easy way to introduce yourself to your legislators. Simply share your story by sending a personalized email today!

As always, if you have any questions, feel free to let us know at advocacydc@heart.org

We can’t wait to see your videos. Thanks for being the cure!

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Update: 'Cliff' Deal Helps Protect Medicare Stroke Patients

As the world welcomed 2013 this week, a serious deadline loomed for stroke patients on Medicare.  The Medicare therapy caps ‘exceptions process’ was set to expire on December 31st, 2012, putting beneficiaries at risk of not being able to access the physical, speech, and occupational therapies they may need. 

However, the last minute deal by Congress to avoid the ‘fiscal cliff’, called the American Taxpayer Relief Act of 2012, included a provision supported by the AHA/ASA that extends the Medicare therapy caps exceptions process for one year, until December 31, 2013. This provision will once again help ensure that Medicare beneficiaries who have a stroke will be able to access medically-necessary therapy services even after the limits have been reached.

Thank you to the advocates who answered our call to action to push Congress for a resolution on this critical issue! 

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2012 You're the Cure Federal Recap

As we get ready to welcome the 113th Congress to Capitol Hill in January, we wanted to take a moment to reflect on all of the activity that took place on key heart and stroke issues this year.  In a tough economic environment, You’re the Cure advocates, like you, helped play critical defense to protect funding and programs that support our shared mission of building healthier lives.

We’re also proud to report that over 34,000 new grassroots advocates joined You’re the Cure this year, making our unified voice that much stronger in our communities, our states, and in the nation’s capital.  And what a noise we made!  Advocates took over 350,000 actions this year, from sending emails and making phone calls, to attending events and meeting with lawmakers, and more.   

Thank you for your hard work to influence Congress in 2012.  We’re excited to make even more progress in 2013!

2012 Action

What’s next?

Congress has yet to extend the Medicare Therapy Caps exceptions process, which is critical to ensuring stroke patients on Medicare are able to access and afford the physical, speech and occupational therapies they need. 

The coverage caps on rehabilitation services will kick in on January 1st, unless Congress passes an extension of the exceptions process by the end of the year.  Tell your legislators immediate action is needed for Medicare stroke patients now!

A key provision of the HEART for Women Act was signed into law earlier this year as part of a larger bill extending funding for the Food and Drug Administration! 

The new law requires the FDA to report on how new prescription drugs and medical devices work for women and minorities and to develop an action plan for improving participation in research.  Watch for the FDA’s report and action plan in the next 18 months.

The Supreme Court upheld the Affordable Care Act and key patient-protections continued to take effect.       

As implementation continues toward 2014, when several  key provisions will take effect, the AHA will continue to work to ensure the needs of heart & stroke patients are being met.  Learn more about what the law means for you. 

The fate of the Fresh Fruit and Vegetable Program (FFVP) remains undecided, with the House and Senate yet to reach an agreement  on the reauthorization of the Farm Bill.

As Congress’ work to pass a Farm Bill continues in the 113th Congress, so does our work to protect the FFVP and other nutrition programs from being cut or altered.  Take action in support of fruits and veggies in schools.  

As the Federal government works to negotiate a deal to address the current fiscal situation, funding for National Institutes of Health (NIH) research, Centers for Disease Control (CDC) prevention programs, and the Rural and Community AED program remains in jeopardy. 

If Congress and the President fail to stop automatic across-the-board funding cuts (aka: the ‘sequester’) by the end of the year, research and prevention programs will be cut by 8.2%.  Speak-up today to help prevent cuts!  The President will submit his 2014 budget to Congress in February, from which Congress will negotiate an appropriations bill.  Stay tuned for opportunities to act.

Programs that support walking amd biking in communities, like Safe Routes to School, took a big hit in the Transportation Bill passed and signed into law.  Loopholes now exist that allow states to use previously dedicated walking and biking funding for other transportation projects.   

Communities around the country are now hard at work to ensure that funding is provided for walking and biking projects as the law is implemented.  The Transportation Bill will need to be renewed in two years, presenting an opportunity to regain dedicated funding for bike and pedestrian initiatives.   

Big Tobacco’s efforts to get cigars exempted from the Food and Drug Administration’s (FDA) authority to regulate tobacco products bill did not succeed this year.

The bill could come up again in the 113th Congress.  We’ll need your help to continue to keep the pressure on Congress to reject efforts to exempt any tobacco products from the FDA’s regulation authority. 

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Protect Medicare Stroke Patients!

For most people, the end of the year is a joyous time, filled with anticipation for the New Year. However, for millions of stroke patients on Medicare and their families, this is a time of worry.

That’s because, unless Congress acts by December 31st, unfair caps on their rehabilitation coverage will kick in on January 1st, leaving patients with extremely limited access to critical therapy services and facing steep out-of-pocket costs. Will you take a minute to speak-up for stroke patients and ask your legislators to prevent this from happening now?

Following a stroke, speech, physical, and occupational therapies are necessary for many survivors to regain their ability to walk, talk, and carry out daily activities again. But the arbitrary, annual limits soon to be placed on these treatments for Medicare beneficiaries threaten their recovery.

That’s why we need Congress to swing into action now and either repeal the caps or extend the Medicare therapy caps “exceptions process”, which has allowed patients needing additional therapy to access the care they need. Send a quick email today to help keep this urgent issue at the front of lawmakers’ minds during this busy time on Capitol Hill.

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Waiting for 2014: Henry & Essential Health Benefits

Continuing their “Real Stories, Real Reforms” series, Georgetown University Health Policy Institue's CHIRblog presents the second profile of everyday people across the country who will – or have already – benefited from new consumer protections under the Affordable Care Act.  Meet Henry, a pediatric stroke survivor, and learn about his family’s struggle to obtain affordable, quality insurance and how the Affordable Care Act may help.

Losing health care coverage just before your due date is not something you read about in “What to Expect When Expecting.”  Who would expect to lose their health insurance just when they needed it the most, but that is just what happened to a family from Plain, Wisconsin.  When other expectant parents were putting finishing touches on the nursery or picking up a few more diapers, Beth and Aaron Ferstl were grappling with news that Aaron had lost his job and with it, his family’s health insurance.

Aaron was laid off on January 16, 2009.  He and his wife assumed their family’s health insurance coverage purchased through his employer would cover them through the end of the month. Beth’s due date was less than a week away, so if all went smoothly, Beth and Aaron were hopeful their new baby would be born while they were still insured.

But life doesn’t always go as planned and their new baby came a couple of weeks after Beth’s due date.  They also received the shocking news that their health insurance coverage was cancelled the day Aaron lost his job. Under a federal law known as COBRA, workers who lose or leave their job are eligible to continue their coverage in their former employer’s health plan, as long as they pay the full premium. So with money from their savings and lots of help from family, Beth and Aaron scraped enough together to pay the high-cost COBRA premiums to continue their coverage.

Unfortunately, their bad luck did not end there.  Shortly after delivery, their newborn son Henry began seizing and stopped breathing. His doctors soon determined that Henry had suffered a stroke in utero, the result of a blood clot that lodged itself solidly in the left side of his brain.  Visit the CHIRblog to read the Ferstl family's full story.

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Advocate Spotlight! AHA President Donna Arnett

Donna Arnett, Ph.D., MSPH, has worn many hats- nurse, researcher, epidemiologist, volunteer, public health advocate- and now, President of the American Heart Association.  Having dedicated her career to understanding how diseases affect various populations, her leadership, expertise, and passion will be a valuable asset as the AHA continues to work toward its goal of improving the cardiovascular health of all Americans by 20 percent while reducing deaths from cardiovascular diseases and stroke by 20 percent, by the year 2020.

In her role as President, Dr. Arnett has made it her mission to encourage every person and group she meets with to take small steps toward a healthier life.  “We know so much about how to protect cardiovascular health and that by following a healthy lifestyle and preventing risk factors from developing, much of cardiovascular disease and stroke can be prevented,” she shared. 

And as a researcher and a concern citizen, Dr. Arnett knows the impact she can have as a You’re the Cure advocate too.  She has been an active advocate for years, helping to educate her lawmakers about the importance of funding for the National Institutes of Health (NIH), which has made much of her research possible, and pushing for policy changes that promote prevention.

“Advocacy is critical for us to reach our 2020 goal.  To make large population changes, we need to have policies that address whole populations, including making healthy foods more available and affordable, creating infrastructure to support physical activity in schools, and making cities more ‘walkable’,” she said.  “And we need NIH research to find the best and most cost-effective treatments for those who already have heart disease or stroke.”

That’s why Dr. Arnett is calling on all AHA volunteers to join the organization’s advocacy efforts.  “It’s fast, easy, and effective.  Combining your voice with the thousands of other AHA voices is a powerful tool, and highlights the foundational principles of our democracy.”

In addition to serving her two-year term as President of the AHA, Dr. Arnett is the Chairperson of the Department of Epidemiology at the University of Alabama at Birmingham School of Public Health.

 

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State Spotlight! PA Makes Strides in Improving Stroke Care

Pennsylvania Governor Tom Corbett helped cap off a successful Stroke Month by signing critical legislation that will help improve stroke care across his state. This exciting win would not have been possible without the dedication of You’re the Cure advocates, who have been working to pass stroke legislation in the state for more than six years.

The new law, which directs the Department of Health to recognize hospitals which have achieved national certification for stroke care and requires the Department’s Bureau of EMS to adopt specific measures to promote better response rates and quality of care for stroke patients, takes effect on July 28th.

It was the drum beat of grassroots advocates that kept the bill alive in the state legislature. Since May 2011, they sent over 3,600 emails to their legislators and attended nearly 100 face-to-face meetings. Advocates even gathered at the state capital in February to make sure the issue was front and center in lawmakers minds.

Cindy Flynn, a four-time stroke survivor and the 2011 National Survivor-Advocate of the Year– was instrumental in convincing the Senate Majority Leader to be a champion for legislation. His support was critical to getting the bill across the finish line.

The AHA/ASA is also proud of the partnerships formed throughout the campaign, including the Hospital and Healthsystem Association and the Penn State Hershey Medical Center.

Congratulations to the entire Pennsylvania You’re the Cure team who demonstrated to all of us that persistence pays off!

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You’re the Cure Advocates Urge Congress to Protect NIH Funding!

On June 6th, over 40 You’re the Cure Advocates from 17 key states came to Washington to urge their Members of Congress to protect funding for the National Institutes of Health (NIH) from automatic budget cuts set to occur in January 2013. If the automatic cuts (or sequester) occurs, the NIH could see cuts that total around 8 percent. 

The day started bright and early at a local DC hotel, where advocates and participating staff were welcomed by AHA CEO Nancy Brown and Vice President of Federal Advocacy Sue Nelson. After an impressive group photo, AHA President Dr. Gordon Tomaselli briefed advocates about the funding situation and the damage that the NIH could suffer if the automatic cuts occur.  Stroke survivor Barry Jackson and heart disease survivor Gail Harris-Berry, who are profiled in a complimentary advertisement campaign that is currently running in Capitol Hill newspapers, also shared their personal stories with their fellow advocates, before everyone headed to Capitol Hill for their meetings.

From saving lives to creating jobs, the survivor/researcher pair from each key district were able to give lawmakers their own perspectives on why protecting research funding is critical.   Highlights included 10 year-old Olivia Quigley, accompanied by her father Joe, who shared her story of suffering a sudden cardiac arrest while in gym class with Senator Scott Brown (MA).  And the Hodge Family, including Maddie Hodge who was born with a supraventricular tachycardia and is alive today due to medial research, who met with Senate Majority Leader Harry Reid from Nevada.  In total, advocates helped deliver the "research saves lives" message to 62 congressional offices!   

Check out the You’re the Cure Facebook page for continual updates and photos of the event!

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New Ads are a Compelling Weapon in the Fight Against Smoking

Washington, D.C., Mar. 15, 2012 — American Heart Association CEO Nancy Brown issued the following comments on the new National Tobacco Education Campaign, unveiled today by the Centers for Disease Control and Prevention (CDC):

“The CDC’s new tobacco education campaign could not come at a better time. The painfully real accounts of former smokers featured in these ads will focus public attention on the devastating health effects of tobacco use, encourage current smokers to quit and help strongly combat the tobacco industry’s efforts to foster a new generation of addicts.

About one-third of smoking-related deaths in the United States are linked to cardiovascular disease. The stories of two Americans included in this campaign, who suffered from a heart attack and a stroke as a result of smoking, are harrowing examples of how tobacco can ruin an individual’s health. The ads highlight a shocking but very realistic fate that could await some current smokers if they continue their tobacco addiction. As the ads emphasize, smoking contributes to 1 in 5 strokes, and your chances of having a heart attack increase every time you light up.

The Surgeon General’s report released last week points to strong evidence that tobacco-education media campaigns can help reduce the number of smokers in this country. The American Heart Association believes these graphic ads, coupled with vigorous tobacco control at the state level, will reach not only the adults who smoke, but also will break through to teens and discourage them from ever taking up this deadly habit.”

Visit the CDC website or click the video below to see these compelling ads for yourself!

 

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Sen. Mark Kirk's Recovery "Excellent" After Stroke

On January 21st, Senator Mark Kirk from Illinois had a stroke at the age of 52. Only 15 weeks later, his recovery has been described as “excellent” by his doctor in an article in the Chicago Tribune. Sen. Kirk’s ongoing recovery shows how important medical research is to stroke recovery.

Sen. Kirk also penned a letter-to-the- editor describing his stroke and recovery.

“Early detection is key to survival,” said Kirk. “My staff and I are working on a legislative package to help with early detection and prevention programs.”

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White House Community Leaders Briefing Recap!

The American Heart Association’s advocacy volunteers are called You’re the Cure advocates for a reason. On February 24th, 70 outstanding volunteers brought their passion, stories, and expertise to the White House for the Community Leaders Briefing on Cardiovascular Health. This special event was an important opportunity for high level administration officials to hear from heart disease and stroke patients, caregivers, medical professionals, and community health leaders and discuss the role of public policy in building healthier lives free of cardiovascular disease and stroke.

The most powerful part of the day was the town hall meeting with Jon Carson, White House Director of Public Engagement, as advocates spoke-up to share their stories, such as:

  • Dr. Willie Lawrence, a cardiologist from Kansas, who described saving a woman’s life using hands-only CPR while dining out the night before the event. He stressed the need for a public trained in CPR and improved access to AEDs.
  • Emery Miller, a teenage congenital heart defect survivor from Arizona, who talked about his upcoming fifth heart surgery and his efforts to inspire other youth in his community to not let challenges hold them back.
  • Ruth Caruthers, a caregiver from West Virginia, who expressed the pain of losing her infant son, Corbin, to heart defects last year. In his honor, she is now leading an advocacy effort to get her state legislature to pass a bill that would require every newborn to be tested for heart defects.

Other event highlights included:

  •  An East Wing tour of the White House.
  • Listening sessions on the Million Hearts Initiative, the Affordable Care Act, National Institutes of Health research, and efforts to reduce health disparities.
  • A “tweet-up” with advocates and Jon Carson.
  • Roundtable discussions on clean air policy, childhood obesity and nutrition policy, and tobacco control policy.

The commitment of our volunteers shined throughout the event as they asked the tough questions and spoke about their local advocacy work. The American Heart Association looks forward to a continued dialogue with the administration as we work to advance heart-healthy and stroke-smart legislation and regulations.

Follow all of the action as it happened on Storify!

For more event pictures, visit www.flickr.com/amheartadvocacy.

 

 

 

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Highlights from White House Town Hall

You’re the Cure advocates and AHA volunteers have had an exciting day participating in the White House Community Leaders Briefing on Cardiovascular Health on February 24, 2012. During the town hall session led by Director of Public Engagement, Jon Carson, some very powerful stories were shared. Here are some highlights.

• Lisa Deck, a three-time stroke survivor in her 30s, shared her story and asked how survivors like her can help the administration spread the word about the Affordable Care Act.

• Dr. Willie Lawrence, a cardiologist practicing in Kansas City, KS shared his incredible experience of saving a woman while dining out in D.C. the night before the event. CPR saved the life of an otherwise healthy woman who collapsed in the restaurant.

• Emery Miller, 13 year old youth advocate from Phoenix, AZ, shared his story of being born with a congenital heart defect. Throughout his young life, Emery has had four open heart surgeries, and his fifth is scheduled not long after returning home from Washington, D.C.

• Ruth Caruthers shared her heart-breaking story having lost her son Corbin just four-months after birth due to multiple heart defects. Ruth has worked tirelessly as an advocate to support legislation in West Virginia that would require pulse oximetry screening for all newborns. This inexpensive test can detect heart defects and save lives. The legislation has already passed the House and now moves on to the Senate for consideration.

These are just a few of the stories shared at the town hall. Jon Carson closed the event by sharing that although several other similar briefings have been held the Cardiovascular Health session was the most impactful. Great work You’re the Cure advocates and AHA volunteers!

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Minnesota Volunteer Briefs Local Media before White House Visit

Minnesota You’re the Cure advocate Stevie Nelson stopped by a local news station and told his story about surving a stroke and his upcoming trip to Washington, D.C. for the White House Community Leaders Briefing on Cardiovascular Health.

After surviving a stroke, Nelson found a new life mission by volunteering with the American Heart Association and will sharing his story with top Obama Administration Officials tomorrow in D.C.

Watch his appearance now!

 

 

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Postal Service Unveils Heart Health Stamp

History was made today. Right in the midst of American Heart Month, the United States Postal Service unveiled a new Heart Health Forever® stamp during a commemorative ceremony in Washington, DC. The stamp was designed to help raise awareness of the nation’s No. 1 killer, heart disease. Since 2001, the American Heart Association has been advocating for this stamp and today the USPS delivered.

“We want to thank the United States Postal Service for creating this exciting new stamp that will help us advance our mission to build healthier lives free of cardiovascular diseases and stroke,” said Barry Franklin, Ph.D., Chairman of the American Heart Association National Advocacy Coordinating Committee. “This stamp is a reminder to all Americans that embracing healthier lifestyle changes today can improve all your tomorrows.”

U.S. Surgeon General Regina Benjamin, Postmaster General Patrick R. Donahoe and Dr. Stuart Seides, Executive Director of MedStar each spoke about the importance of the new stamp and how the image communicates the feelings of wellness and vitality that comes from physical activity and a well-balanced diet.

You can pick up your Heart Health Forever® stamp at the post office today and begin spreading heart health awareness whenever you mail a letter, a birthday card or even your electric bill!

Also, click here to watch a short clip from the ceremony!

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Health and Human Services Year in Review

Check out this video below from the U.S. Department of Health and Human Services that recaps 2011. In this video, HHS Secretary Kathleen Sebelius speaks about the Million Hearts Campaign, which the American Heart Association is a proud member. The Campaign aims to prevent one million heart attacks and strokes over the next five years.

Click to see the video!

 

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Stroke – our nation’s 4th leading cause of death – takes a life every 4 minutes. It affects nearly 800,000 people each year and is the leading cause of long-term disability. Choosing a healthy and active lifestyle can dramatically reduce the risk of stroke, especially for those who smoke, have high blood pressure or have diabetes and are already at a greater risk.

Stroke can – and does – afflict people of all ages. The American Heart Association and the American Stroke Association advocate for policies that will help reduce instances of stroke including:

                Improving Systems of Care

We are working on policies that ensure patients arrive at a stroke certified hospital as soon as possible after they have a stroke. This is crucial for their survival and recovery.  

Enhanced Research to Fight Stroke in Children

We support devoting more resources to studying stroke in children, increasing awareness among parents about the potential for stroke and ensuring that children who suffer a stroke are adequately insured.  

Nationwide Stroke Registries and Quality Improvement

We are working with officials to support stroke registries, which gather information and help hospitals identify specific populations that are particularly affected by stroke and improve quality of care. 

Lend your voice as we ask our lawmakers to support crucial measures in the fight against stroke.

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Facts and Figures

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    Facts: January 2013 AHA Policy Report

    Find all of AHA's Policy Position statements on various issues with this "at-a-glance" report entitled the Policy Report.

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    Facts: Pediatric Stroke

    Get the facts about stroke's impact on children & the need for research and access to care for these patients.

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    Facts: Stroke in the U.S.

    Get the facts about our nation's No. 4 killer & policy solutions to improve the prevention, diagnosis, and treatment of stroke.

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    Facts: Primary Stroke Centers

    Get the facts about improving stroke systems of care through the establishment of primary stroke centers. 

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    Facts: Systems of Care for Cardiovascular Conditions

    Get the facts about coordinated health care delivery systems that can improve outcomes for patients.

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Campaign Resources

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    Presentation: Communicating with Congress

    View the slides from the recent presentation entitled Communicating with Congress: How to turn a 10-Minute Meeting with a Legislator into a Life-Long Relationship

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Grassroots Toolkit

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    You're the Cure Sign-Up Form - Stroke

    Recruit others to join you as a You’re the Cure advocate using this printable sign-up form.

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    You're the Cure Advocate Guide

    Use this guide to learn about more ways you can get involved as a You’re the Cure advocate.

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